For a parent of a child diagnosed with a chronic illness like Crohn’s disease or ulcerative colitis, the future can be scary and overwhelming. Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient
Understanding Pediatric Chronic Illnesses
How families can manage inflammatory bowel diseases
(Family Features) For a parent of a child diagnosed with a chronic illness, the future can be scary and overwhelming. Assembling a medical team and beginning to formulate a treatment plan, even becoming familiar with a glossary of new terminology, can be taxing.
Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient. For example, the Crohn’s & Colitis Foundation is a leading resource for families navigating inflammatory bowel diseases like Crohn’s disease and ulcerative colitis.
What is IBD?
Crohn’s disease may occur in any part of the large intestine (also called the colon). In fact, it can happen anywhere in the entire digestive system. However, it most commonly develops right where the small and large intestine meet. In ulcerative colitis, only the colon and rectum are affected.
No one knows for sure what causes Crohn’s disease or ulcerative colitis, but experts believe several factors may lead to the development of the diseases, including genes, environmental elements like viruses and bacteria, and inappropriate immune reactions.
What are the symptoms?
“It is critical that if you suspect your child has inflammatory bowel disease, you seek care with a qualified pediatric gastroenterologist who can carefully and efficiently help determine the diagnosis and begin a treatment plan to help your child feel better, thrive, and maximize quality of life,” said Andrew Grossman, MD, pediatric gastroenterologist and chair of the pediatric affairs committee of the Crohn’s & Colitis Foundation.
How does it affect children?
They are often overwhelmed by the emotional and psychological side effects of the disease.
Learning how to manage the disease is not always easy for children. Parents play an important role in educating their children about IBD, including teaching them they need to take their health seriously and take responsibility for caring for themselves.
How can IBD be managed?
Maintaining your child’s health may also involve lifestyle accommodations, like organizing your schedule for ample bathroom breaks when away from home. You may also need to work closely with your child’s school to manage absences and academic performance along with any medical care that needs to take place during school hours.
Many families also find value in building a network of supportive friends and loved ones. One example, the Crohn’s & Colitis Foundation offers Camp Oasis – a co-ed residential camp program that allows children to meet others like them in a safe and enriching environment.
Another resource is justlikemeibd.org , a website featuring stories and videos from teens with IBD as well as information on school, dating, managing stress and diet, research updates, and resources for parents.
Is your child ready to manage his or her own care?
Photos courtesy of Getty ImagesSOURCE:
Crohn’s & Colitis Foundation
(BPT) - For people living with asthma, managing the condition becomes part of their daily life. But some may not know that, in spite of their best efforts, their asthma may still be uncontrolled.
Benjamin Buckley was one of those people. Ben, as he was known, was just 7 years old when he died from asthma-related complications in 2014. Now, Ben’s mother, Cristin Buckley, is sharing his story in an effort to help raise awareness of just how serious asthma can be.
According to Cristin, it was a normal Saturday morning in the Buckley household. Ben went to his sister’s basketball game with the rest of the family, but when the game ended, Ben asked if he could go home and use his nebulizer, as he was experiencing an asthma attack.
Later that day, Cristin received a frantic call from her husband and daughter and came home to find Ben had collapsed in the driveway. Police and paramedics were already on the scene performing CPR. They were able to start Ben’s heart, but he was unconscious and not able to breathe on his own. He remained in a coma for five days until he passed away.
“What we didn’t realize was that Ben was using his rescue inhaler way more than he should have been. We were refilling it once a month,” said Cristin. “The pharmacy just kept refilling the prescription, so we didn’t think it was an issue. Looking back now, we know his asthma was uncontrolled.”
And it appears the Buckley family is not alone, as studies indicate that asthma is responsible for deaths every day in the United States, most of which are believed to occur in patients with uncontrolled asthma.
“Uncontrolled asthma can have a huge impact on a patient’s health,” said Dr. Purvi Parikh, a New York City-based allergist and immunologist and national spokesperson for the Allergy and Asthma Network. “Patients may not know the signs — but if someone is using their rescue inhaler more than twice a week, and their asthma is interrupting daily activities and sleep, they should really talk to their doctor immediately to assess if it is uncontrolled.”
Cristin’s number one priority today is that Ben’s asthmatic twin brother Adam, now 11 years old, is equipped to handle an attack on his own. To ensure he is prepared, Cristin takes Adam for his annual check-up with his allergist before the school year starts.
“Make sure their doctor takes the time to sit down and teach them how to properly use their inhaler,” Cristin said. “People think they can just put it in their mouth and take a few puffs and it works just fine, but so much medicine is wasted or doesn’t get into the lungs because they’re not taking a deep enough breath.”
Another one of her main priorities, particularly before school starts, is to make sure all of Adam’s inhalers have enough medicine in them. As such, Cristin relies on inhalers fitted with dose counters to help both her and Adam better manage his asthma. A dose counter works by showing the user exactly how many doses are left in the inhaler — similar to looking at a bottle of pills to see how much medicine is left.
“I think dose counters are one of the best things ever invented,” Cristin said. “Before they were integrated into inhalers, you were blindly leading your child. You had no idea how much medicine was left.”
Dr. Parikh also noted that the addition of a dose counter to asthma management can create a helpful dialogue between patients and their doctors. She explained how the dose counter allows the doctor to see how much medicine has been used since the previous visit and determine if a patient is using their rescue inhaler too frequently.
“When using an inhaler that does not include a dose counter, you really are taking a gamble on your life,” said Cristin.
For additional information on the importance of dose counters, visit KnowYourCount.com, and for more on Ben and Cristin’s story, visit www.BenWasHere.org.
Mrs. Buckley has been compensated for her time in contributing this program.
(BPT) - While magazines make summer beauty look simple, in reality it's anything but. From bloat to breakouts, summer is wrought with beauty challenges.
The experts at the Mayo Clinic offer advice on eight of the most common beauty and health concerns of summer.
1. Maintaining a healthy (natural) glow
While tanning beds offer a quick-fix to achieving a golden glow, they also cause exposure to damaging UV radiation which can cause premature aging as well as increase the risk of skin cancer. If you'd like a sun-kissed glow without the risk, consider using a sunless tanning product. Whether in the form of a lotion, spray or done as a professional service at a salon, sunless tanning offers a safe alternative to both tanning beds and sunbathing.
2. Ingrown hairs
Swimsuit season often means shaving more frequently, which can result in painful and unsightly ingrown hairs. These hairs grow out of the skin slightly and then curl back underneath the skin. To avoid ingrown hair, use a lubricating shave gel followed by a sharp, single-blade razor. Shave in the direction of hair growth and avoid pulling the skin taut.
It's easy to get lost in the fun of the summer sun. Avoid sunburn by dressing in light layers and using a broad-spectrum sunscreen with an SPF of at least 15. Remember, sunscreen generally stays at original strength for three years. If you do get sunburn, take a cool bath or apply a clean towel dampened with cool tap water. Then apply moisturizer, aloe vera lotion or gel or a low-dose hydrocortisone cream.
Ice cream, hot dogs and fried goodies are cornerstones of traditional summer festivals. Unfortunately, too much of these types of foods can leave you feeling bloated and sluggish. Fight bloat by eating fresh foods grown locally, such as carrots, tomatoes, melons and berries. Want a healthier cool treat? Try freezing grapes for a no-guilt sweet dessert.
5. Cracked nails
Pool chemicals, hot sun, gardening and building sand castles can all cause cracked nails. To protect nails, keep fingernails dry, clean and rub moisturizer into the nail beds and cuticles. Consider applying a nail hardener to add a protective layer against summer elements. If brittle nails persist, ask your doctor about biotin, a nutritional supplement that may help strengthen weak fingernails.
6. Healthy, hydrated skin
Staying hydrated is a summer must, but skin hydration isn't as simple as drinking water. Dehydrated skin feels rough and loses elasticity. To maintain proper hydration, avoid prolonged exposure to dry air or chlorinated water. When bathing, use a gentle cleanser instead of soap and avoid using skin care products that contain alcohol. Moisturize immediately after cleansing. Also try incorporating antioxidant-rich foods into your diet such as spinach, blueberries or salmon.
Sunshine and heat can cause the body to sweat. This combo clogs pores and can lead to acne. Some chemical treatments can leave the skin more sun-sensitive, so natural treatments such as tea tree oil, azelaic acid and even green tea extract are a smart choice in reducing inflammation. Another potential cause for acne can be outdated cosmetics. Make sure the products you use are kept clean to avoid bacterial buildup and avoid using them past their expiration date - six months is a good rule of thumb.
8. Beautiful legs
From swimsuits to shorts, summer is the time most people show off their legs. This can be uncomfortable for some when faced with common leg woes such as spider veins and varicose veins. Several options are available to combat these issues which range from sclerotherapy and laser surgery, to more advanced techniques such as vein-stripping. To learn more, visit mayoclinic.org to find out what treatment is best for you.
To discuss these and any other persistent skin or summer-related health concerns, make an appointment with Mayo Clinic Dermatology today.
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